High on sight

A Kerotoconus-sufferer has poured his experiences of a 14-day Himalayan trek into a film, hoping to inspire those afflicted by the degenerative eye disease

When he finds himself on the top of a mountain, which is often, George Thengummoottil first takes in the majestic vistas, breathes in the invigorating air and trains his ears on the sounds around him. Then, he shuts his left eye and waits for another world to emerge. In front of his right eye, clouds merge into circles, greenery moves about in patterns, and the sights and sounds coalesce into a psychedelic experience, one he loves.

Listening to him talk, it’s hard to imagine that Thengummoottil once sat at home, depressed, almost sightless, and full of self-pity and rancour. The journey from there to a man who routinely found himself on mountain peaks in India and Bhutan had a lot to do with willpower, the magic of the mountains, and often ‘stupidity’ as he puts it. A smattering of wry humour may have helped too, we reckon. Not many who suffer from diseases such as Kerotoconus – an eye disorder that cannot be corrected using glasses, in which sufferers often lose complete vision that cannot be corrected without a transplant – might look at the world with their almost-sightless eye and “trip” on the patterns that emerge there.Thengummoottil has chronicled his impressions of living with Kerotoconus and his love affair with the mountains in a documentary film Singalila in the Himalaya. Its subject is a 14-day trek in Sikkim, with views of Mount Kangchenjunga and Everest from many directions.

But Singalila in the Himalaya is more than just about the beauty of nature or trekking or travelling. In many ways Thengummoottil’s year-long stint in Bhutan, where he taught computer science at a government college, rescued him from a miasma of melancholy, catapulting him into a new life of filmmaking and travelling, and this is what the film tries to capture.

When he was 13, Thengummoottil found his vision becoming blurred. Doctors dismissed it as little more than ordinary short-sightedness. By the time 11th grade came around, he could barely see. A different doctor diagnosed it as Kerotoconus, in which the cornea thins and loses shape, due to which only hard contact lenses placed very close to the eye can help, as they attempt to ‘reshape’ the cornea.

It was painful and uncomfortable, and he got through college with difficulty, unable to read, dependent on family and classmates to complete projects.

After an unsuccessful transplant in 2007, Thengummoottil recovered enough vision in his left eye after a second transplant plus Lasik surgery in 2008. Still, life was difficult. After graduating with a degree in computer science, he dropped out of the job he was placed in because he “just couldn’t manage”. And just when life seemed bleak and desolate, along came the opportunity to teach in Bhutan. Despite being dissuaded by family and friends, it was a challenge he accepted, because, he says, “I was already suffering so much, what’s the worst that could happen?” Little did he know that to not despair and a bit of daredevilry would lead him to higher peaks, literally and metaphorically.

That one year changed his life, he says. He trekked to medically inadvisableheights, and even with the risks – changing altitude and air pressure can threaten his cornea and cause pain – and found he was addicted. “My doctor told me not to go above 3,000 metres but I went up to 5,000 and 6,000 metres.” Did it hurt? “It still does. It feels like someone is pulling the eye out,” he says matter-of-factly. But he wasn’t bothered. “I didn’t want to postpone joy.”

He did the Singalila Trek three times, each time without informing his family, which would have tried to dissuade him, he says with a laugh. By the third time in 2015, he knew he wanted to make a film, and decided to undertake a master’s course in filmmaking after returning from Bhutan.

There have been challenges aplenty. Probably the biggest were the descents in treks, especially on terrains with boulders. His condition makes it difficult for him to judge distance and depth, which meant he fell down. A lot.

With low-light vision being nil, he had to be carried back to camp by his companions after he fell over a few times after sundown while walking back. Both the ascent and descent are fraught with danger, for instance when he had to jump between boulders, something he did carefully, with measured steps when he could, and with foolhardy derring-do at other times. “When you have such a condition, you decide to do whatever the hell you want. Sometimes it works, and sometimes it can be close to stupidity,” he says with that curious mixture of arrogance and nonchalance. Like when he tried driving and realised it wasn’t safe.

Singalila in the Himalaya marks another achievement. The film is shot on cameras charged entirely on solar panels the team carried with it on the trek, because the logistics of charging the equipment in such remote areas were challenging. Thengummoottil put to use his love and knowledge of engineering (he didn’t pursue it because of his condition) to create a custom charging system using solar panels. Most such films charge their cameras using large generators that they lug up – for which Thengummoottil had neither the budget nor the people. All the cameras on the project – the Go Pro camera, the Canon 500D, and 600D DSLR were charged using this system.

Three years ago, Thengummoottil started the Kerontoconus India Trust to help others like him. He says, knowing there were others suffering like him would have helped tremendously when he was depressed. “Many doctors don’t even know about the condition, the spread of which can be arrested if diagnosed early. Others advise against transplants. If you’re confused, the Trust can talk to you about the action to be taken,” he says.

For him, the best medicine has been the mountain air and sights. “I’m trying to make the most of my eyes while I have them,” he says, simply. And he hopes people see the film and feel the same way.